Voice Male--Spring 2007
Diagnosis: Prostate Cancer
There Were No Symptoms
By Felicity Pool and Allen Davis
In 21st-century America, one out of every six men will be diagnosed with prostate cancer during his lifespan, especially from age 45 on. That's 218,890 new cases. This year 27,050 men will die from the disease, many unnecessarily. Routine physicals leading to early diagnosis and prompt treatment are highly effective. In the words that follow, Felicity Pool and Allen Davis invite Voice Male readers into a recent time in their lives when they were dealing with a dangerous and challenging episode for both of them--Allen's diagnosis of prostate cancer.
There were no symptoms. Allen had none of the worrying capital-letter "Warning Signs of Prostate Cancer"--urinary discomfort, erection and ejaculation troubles, bloody urine or semen, pains in the pelvic area. No one in the family had had the disease, nor was any relative known to be African American or Native American (both additional risk factors). Allen was an apparently healthy 59 ... but with a PSA of 4.6 (up from 3.5 the previous year).
If you're a person fortunate enough not to have had to learn cancer language and cancer numbers, you might not know that PSA stands for Prostate-Specific Antigen, a protein made in the prostate gland and routinely released into the bloodstream. The more of the antigen found outside the gland, the likelier it is you've got prostate trouble, and the biggest trouble is cancer. Blood drawn from the arm can be analyzed for PSA levels: a reading of 0–4 is generally considered normal, 4–10 is intermediate, 10 and above is high.
Allen’s PSA had increased more than a point in one year--from 3.5 to 4.6. "Don't worry," said his friend Jonathan. "You get a lot of false positives with that test." A colleague announced, "I'm not even bothering with a PSA--too many inflated numbers and false alarms." The doctor explained, "A PSA is the most sensitive diagnostic test we have, and with more sensitivity comes more likelihood of false positives. But if we repeat it and do another test as well, the information is extremely accurate." Back Allen went to the laboratory for more blood work.
"PSA of 4.4," reported his doctor this time around. "But your Free PSA is 16.9 percent. Come in to the office for follow-up."
We had more cancer language to learn. We're including it here because we found it comforting when our friends and family understood what was worrying us, once we had the second set of Allen's numbers. Imagining how many other men and their loved ones will be having to interpret PSA numbers, it feels helpful to spread the comfort of understanding.
Prostate-Specific Antigen is found in the blood in two ways--molecularly bound up or unattached (i.e., running "free" in the blood). In general, to find a low percent of PSA free means that a high percent is bound up, an indicator of prostate cancer. Out of every 100 cases detected, 92 of the men had a Free PSA score below 25 percent. At 16 percent, therefore, Allen was in an at-risk category.
The frequent occurrence of the disease presumably explains why our language contains such an alphabet soup of prostate-related abbreviations. Next up were the terms DRE (Digital Rectal Exam), BPH (Benign Prostatic Hypertrophy), and Ca (medicalese for cancer). The rectal exam--insertion of a health practitioner's gloved and lubricated finger into a patient's rectum--is generally part of an annual checkup. Enlargement or other irregularities of the prostate can be detected via DRE, part of making the diagnosis between cancer and the noncancerous gland enlargement called BPH.
Although Allen's prostate was never found to be enlarged, a biopsy of the prostate gland was scheduled because of his PSA and Free PSA numbers. "We just want to be sure there's nothing going on," said the doctor, referring Allen to a urologist, "but I'll be surprised if they find anything."
A referral to a new physician means getting directions to the office, scheduling time off work, arranging for the referral paperwork, and making sure it arrives at the new office when you do. So you've invested effort and energy just to get there, before you give your name to the receptionist, sit down and look around. At the three urologists' offices we've been in by now the magazines have tended toward the stereotypically male-oriented (business, hunting and fishing, cars). Each of the doctors we saw was male. The waiting-room chairs were occupied mostly by males, with a few female partners. In so strong a same-gender context, a person might look for camaraderie, an empathic sharing of stories or the gory anxieties of what-next. But no one in the chairs spoke or made eye contact except with office staff or, in whispers, to a companion.
A prostate biopsy is office surgery, an hour or less with a local anesthetic (like novocaine at the dentist), after a day of clear-liquids-only and some cleaning out of the patient’s bowels. Tissue samples are taken from up to 12 areas of the prostate and are then examined for signs of cancer. "Not bad--I really didn't feel a thing" was Allen's comment as he emerged back into the waiting room.
The bad part was the five-day wait for the biopsy results. Even worse was the news: cancer was found in three of the tissue samples.
No symptoms + No-higher-than-intermediate-range PSA scores + No palpable prostate enlargement = Prostate Cancer. Unreal.
Deciding What to Do
"I want to be cancer-free," Allen declared. So that was the goal of what-to-do-next: removing the cancer.
It sounds obvious--who wouldn't want to remove cancer from his body? But there are factors--age, general health, disease progression--that can limit a man's options.
Next to lung cancer, prostate malignancy is the most common cancer to strike males in America: good news in that much research is being done; bad news in that much research is required of the patient. Current treatment options for cancer of the prostate are, in alphabetical order: alternative (nonmedical) therapy, chemotherapy, hormone therapy, radiation, and surgery. (For more information about each, check the websites listed as resources at the end of this article.)
For Allen, as for the majority of men with early-stage prostate cancer, surgery emerged as the likeliest way to get to his goal. But what kind of surgery? Traditional removal of the prostate gland via abdominal incision? Or laparoscopy, in which instruments are inserted via mere slits in the abdomen? Or robotic laparoscopy, where the surgeon works with the laparoscopic instruments in a remote-control sort of way, viewing the patient's insides on a screen? How to choose?
The surgeon who did the diagnostic biopsy had performed close to 500 abdominal prostate surgeries. He had recently switched to the robotic laparoscopic procedure. How recently and how many had he done? "My partner and I trained a year ago and we've done about 50 of them," he replied. "But there's a guy I can refer you to wh'’s done more than 300. That's all he does." We liked the man anyway, then liked him even more for his honesty and for the referral.
We made an appointment with the more-than-300 man, at the big-city hospital a two-hour drive away. His focus is on research, looking to perfect the robotic technique. A personable and competent guy, we decided, after an hour's talk. We planned a surgery date for six weeks later, when Allen would be healed from the biopsy.
We met with one more surgeon, a man who performs nonrobotic laparoscopy at a medical center roughly an hour's drive away. He's a professor of surgery with the empathic focus of a good teacher and the distinguished manner of the longtime department head. He put it all together for us: "I've been doing this surgery laparoscopically for a long time and we're pretty good at the nerve-sparing that gets you back to urinary continence and erectile function. The robotic results aren't yet looking much different than our outcomes, although that could always change in the future. I think the main thing is to get rid of the cancer and get back to normal as soon as possible."
"Normal" for the doctor and for Allen includes vigorous squash games several times a week, and the discussion moved quickly to how soon after surgery could that be achieved? We scheduled a surgery date with this guy and canceled the time reserved with the robotic-research surgeon at the city hospital.
Here's what was most helpful in deciding what to do:
Gather medical information--online (see website suggestions below); from people you know who've had similar diagnoses; from your doctor's office. Contrary to the old saying "Ignorance is bliss," we found that ignorance led to fear. The more we found out--especially about the high cure rates for prostate cancer--the more empowered and optimistic we felt.
Gather insurance information. Will your coverage allow you a second opinion? Is coverage dependent on the procedure you choose? How much follow-up is covered? Do you have a choice of hospitals?
Check out the hospital. If you're going through this with a supportive partner, he or she will be spending a fair bit of time at the medical center while you're having surgery (two to four hours) and then for the 24 hours before you're discharged. It was helpful to us to be in as pleasant an environment as is institutionally possible, surrounded by friendly staff and comfortable waiting areas.
Interview doctors, if you have the option of choosing among different practitioners. We found ourselves most comfortable with the surgeon Allen chose not just because of his excellent credentials but because he was at ease talking about the urinary "leakage" (his term) and infirm or absent erections that are initially a consequence of prostate surgery.
Recovery
Other than learning that your body contains cancer, hearing that you'll be leaking urine and unable to get an erection for a while has got to be among the worst pieces of news a man can get. After prostate surgery, a man goes home with a catheter in his bladder which drains into a bag strapped onto his leg. There’s a daytime bag and a nighttime bag, and we found the changeover and bag-emptying went better with two pairs of hands and as much laughter as possible. Even so, the procedures were definitely anti-erotic.
After a week, we were back at the medical center for removal of the catheter. On the way home we found ourselves in the pharmacy's diaper aisle, choosing a product called "adjustable disposable underwear" which promised "worry-free odor control, super absorbency and discretion." To Allen's surprise (he was dreading accidents) this diaper-like garment has worked very well. Do we need to tell you, though, that he has changed his routine after squash or basketball so as to avoid showering in the locker room? It's one thing to show yourself to your partner decked out in a white "diaper," and quite another to appear that way in front of sports buddies.
The length of time a man has to wear disposable underwear or, alternatively, use a pad tucked into jockey shorts, is usually at least three months after surgery. Wanting to get back to padlessness and cotton as soon as possible, Allen had two matters within his control: first, to select the best possible surgeon to minimize nerve damage; second, to do a kind of butt-squeeze exercise called Kegels to strengthen his urinary retention muscles.
The postoperative wait for erections to return can last even longer than the wait for total bladder control. "It's hard to predict," explained the doctor. "Patients who come into surgery having had erections and intercourse with some regularity regain function sooner and more fully than those who weren't having frequent sex. We think a lot of men feel erectile performance pressure, so they end up lying to us about what was really going on sexually before we operated. That makes it hard for us to predict what will happen as they heal."
Prostate Cancer ResourcesWebsites we recommend (in alphabetical order):Memorial Sloan-Kettering Cancer Center National Cancer Institute Prostate Cancer Foundation Books100 Questions and Answers About Prostate Cancer Prostate and Cancer: A Family Guide to Diagnosis, Treatment, and Survival |
We can see why predictions about post-prostatectomy love life are difficult. A man with a diaper and without an erection is not the stuff of romantic or erotic fantasy. However, as humans age our sense of touch becomes more acute. That means hugging, kissing, and massage--none of which has to be associated with diapers or erections--can be more rather than less pleasurable as a person passes the half-century mark. For older men in general, erectile function is a use-it-or-lose-it proposition, which is motivation to engage in sex-touch to help regain function. Viagra and Cialis, both medications to stimulate erections, are often prescribed following prostate surgery.
The Future
We can't know the end of Allen's recovery from cancer since we're still living it. At his one-month checkup, blood was drawn for a PSA (even without his prostate, some of the antigen could be roaming, causing trouble) and the results came back as "undetectable." No cancer! Two months after surgery, his belly shows only faint lines where the laparoscopic instruments were inserted. His spirits are recovering and our partnership continues.
We've shared our story here because nearly every man of our generation or older has told us, in response to our news, that he's "watching" his own prostate or knows he should be. One in six males in America getting hit with a diagnosis of prostate cancer, along with their partners, families, and friends, adds up to a lot of people concerned with the disease--a lot of people we want to encourage to take good care of themselves and one another.
Allen Davis, Ed.D., is executive director of the Greenfield, Mass. Community College Foundation. He serves on the Men's Resource Center for Change Development Advisory Committee, consults to nonprofit organizations, and is a life coach; he's also a passionate basketball, squash, and tennis player. Felicity Pool, RN, Ph.D., is a freelance writer and Allen's Significant Other. Her work has been published in nursing and education journals.
Web Editor's note: We invite readers interested in this topic to see two related articles from past issues of Voice Male:
"There Had to Be Another Way": My Search for Alternative Treatments for Prostate Cancer by Danny Dover (Spring 2004), and
"Yes, I Am Afraid": Healing Emotionally After Testicular Cancer by Brian Pahl (Summer 2004).